Podcast

Interview Date | April 15, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into gentle ambient music through the next few sentences]

NICOLA: My dearest friends, am I allowed to say it’s not so different? The church bells are voiceless. My body remains insistent. Distance is palpable, not unfamiliar. I’m unsettled now by nightingales, but phone bridges arc between us. It is not so different for us.

So, my name is Nicola Rigby. I am a sculptor in the UK. And I was born with X-linked hypophosphatemic rickets, which is a degenerative bone disease. And as an indirect result of that, I’m chronically ill with a range of symptoms, but a major one is chronic fatigue. My body just doesn’t have the energy it needs to function, so it prioritizes different systems and different organs.

And actually, at the very beginning of that journey for me, I was really struggling, and I wouldn’t have become a sculptor if I hadn’t become chronically unwell. Actually, I would probably have laughed at you 10 years ago if you had told me I would be any sort of artist at all. But I really needed a visual language. I needed a way to communicate. Because when I became unwell, I lost the ability for several years to communicate effectively ‘cause I just couldn’t find the words, and I couldn’t put them together. And I had a lot of cognitive impairment. Finding sculpting has been really exciting. Actually, it’s a new way for me to express myself. Although I love, I’m still a writer at heart.

I love writing, and it was lovely to find this project and to be able to contribute. I like the really strict character count. I’ve always found that you’re most creative within really tight boundaries. So, that was great. It did allow me to stop and think how I was feeling at this moment in time and how I was experiencing COVID-19 and being on lockdown. And it almost felt wrong to say it, but it didn’t feel that different! It doesn’t feel that different for me at the moment. We are four weeks into isolation. We’ve been advised to shield. So, that means not leaving the house for 12 weeks. And other than the way we shop and other than the fact that I can’t visit a place called The Sculpture School where I sculpt and I interact with loads of people, things are not that different. I’m used to being housebound and having my main point of contact with people be my mobile phone. Two weeks have passed since I wrote that, and I’ve seen that feeling expressed a lot by people on social media.

JILL: Thank you for sharing that.

[gentle music break]

JILL: It looks like you prepared.

NICOLA: I do prepare. I prepare because I don’t trust my brain. [laughs] And if don’t prepare, I will just sit here, staring at you. [laughs] But yeah, I don’t know. It’s really interesting, actually. It’s made me think about things, and I suppose I’ve thought a lot more about things, and I’ve stopped to analyze things more than I would’ve if I hadn’t been preparing for this chat, so.

JILL: So, what sort of things are you going deeper into, in your thinking?

NICOLA: I’m the first person to put my hands up and confess my ignorance when it comes to everything that disabled community has to tackle really and has been tackling over the years. And I think like the last person you interviewed said, you know, Crip Camp just came out on Netflix, and that was fascinating. And it’s just made me look a lot more at things. ‘Cause you tackle things in your daily life. You tackle really absurd things like we have a disabled parking bay in our local town that is right in front of the doctor’s surgery, and there is no drop curve. So, I get my power chair at the back of our van, and I’m stuck on the road. And I can’t get on the pavement! And I can’t do that without driving down the road and turning into where these huge double decker buses turn into. So, you encounter stuff like that every day, and you think about stuff like that. And you talk to people about stuff like that, and I try to chat to a lot of business owners in our local town and say, “You know, getting in a ramp would be so great! And I love spending money in local shops, and it would help both of us. And it doesn’t have to be expensive. And you could just get piece of wood, and then I could get in! And that would be brilliant.”

But just some of the facts and figures I’ve come across recently about people with disabilities and their life in this country is just shocking. It’s sort of, I know I’m very fortunate. My family’s very supportive, and we’ve always managed to get along. But it makes me feel like I’ve been living in a bubble, really. You know, the figures are so large and so difficult to get a grip on, unless you’ve been touched by COVID-19, unless you’ve lost someone, I think they really are removed. And it just, I’ve always been fascinated by the media and by our desensitization with the media and how we can watch almost anything on TV and not a lot fazes us anymore because we’ve seen it. We’ve seen it before. We’ve seen a war zone and we’ve seen starvation and we’ve seen awful things, and we have this emotional disconnect. I think that’s part of the problem with seeing numbers and numbers and numbers on television of an evening, is that it’s really hard to get your head round that and the scale of it. I think people struggle to get to grips with things like that anyway. Yeah, it does feel like we’re in a bubble.

It’s really interesting watching people on telly, all sorts of people. But they’re [chuckles] sort of drunk on the novelty of being in isolation. And it’s not until you see that, you realize, OK, my life is really different to the mainstream. Because this doesn’t feel that abnormal for me at all. But this is a big thing for a lot of people. This is really taking them out of their comfort zone, and this is fueling anxieties. And it’s creating challenges for people, that actually, I haven’t thought about or haven’t sort of confronted directly for a long time because they’re just part of life. So, it’s definitely offering a new perspective.

JILL: And what is that new perspective for you when it comes to the non-disabled community and the disabled community and their interactions with each other and understandings of each other?

NICOLA: I mean, I would love for people to gain an awareness that the limitations being placed on them now by this virus, by their government, are placed on disabled people by their own bodies. And actually, that doesn’t make us pitiable. It doesn’t make us…. Do you know what? It makes us resilient and tenacious and well-placed to overcome. If any section of society or of any community has the toolkit to cope with isolation and with scanning your body for symptoms, it’s us! And we’re really well versed at creativity within limits. And surely, that makes us a valuable resource. It would be really nice to not be seen as sort of a vulnerable section of society that needs support, but a section of society that can be tapped into. ‘Cause actually, we have really useful insight, and we’re valuable because we don’t achieve things the way people usually achieve things. Because we’re used to thinking outside the box, you know. Because we can come up with innovative custom solutions to issues. Surely that shows that, you know, obviously, we should be involved at every level of government and society and business, but more so in a crisis than ever, surely.

JILL: It seems so straightforward, doesn’t it? So many people would agree with you! And the other piece of what you said when you were talking about the buying power of yourself, you wanting to go into the store.

NICOLA: Mm. Yeah, it’s so…it’s so frustrating because it’s a really age-old thing. I mean, I’ve been very fortunate in a lot of things. I live in a great part of the country. It’s sort of old-fashioned. It’s quite a slow pace of life. People are very friendly. Complete strangers will always say hi. And I have no problem approaching people and saying, “I’m really sorry. Could you just grab that for me? Or could you open this door?” So, I live in a really sort of supportive environment. And I also, I suppose, I really, huh, I really typify that thing about—and I’ll do air quotes now—but looking “normal” and sounding “normal.” So, most of my interactions are positive. They’re limited ‘cause I don’t leave the house that often. So, that’s probably another factor. [chuckles] But I’m really fortunate in that sense.

So, even though I look relatively normal and I sound normal, I’m just sitting down when I’m out. I’m just sitting down in my wheelchair. That’s still a barrier, like you say, to people seeing me as a valuable customer, and I am. I like to shop. I’m a really valuable customer! [laughs] But if that’s my experience, aw, it just shows we’ve got so far to go, and it’s so frustrating. And it shouldn’t be a surprise to me because disability has always been part of life for our family. My younger brother has cerebral palsy and learning difficulties, and he’s a wheelchair user as well. So, that’s really been, that’s always just been part of life. But you do get an entirely new perspective when you’re the one in the chair. So, I think that’s been a big wakeup call. And it shouldn’t take that. It really shouldn’t take that. It’s concerning that it takes that, isn’t it, really?

JILL: Yeah.

[gentle music break]

JILL: One of the things that’s interesting is when you said about your brother and then yourself is, I’m wondering at what age did you realize that you were disabled? And do you remember a moment or a period of time where that became very clear? And if so, what was that?

NICOLA: For me, it was quite a stark transition ‘cause although all through my childhood I was ready unwell, I didn’t attend a lot of school, I did go into a wheelchair when I was young, but just for a period of months. And actually, the healthiest period of my life saw me through college and a gap year in university, and that was fantastic! And I thought I was out of the woods and life was beginning. But then I became very unwell very quickly. There’s a period of three or four years that I don’t remember very well ‘cause I was so ill and so fatigued and not really with it. So, and it’s at that point that I became a wheelchair user, which wasn’t ever a question for me, actually. I’ve spoken to people since who, they were really resistant to going into a wheelchair. I suppose they’re perceiving it as a defeat. And maybe I had the advantage ‘cause we’ve always had wheelchairs in our house. And I wouldn’t have gotten at the house otherwise. And that was definitely my priority. That was much more important for me is still getting an experience in the world.

And I suppose it’s that transition for me into the wheelchair, but crucially, not being able to care for myself anymore. Because I have to be really sensible about where I claw back some independence. Because if I try to make a hot drink for myself, it’ll take me hours to recover. I’ll have to go lie down on the sofa, and it’s not worth it. So, I’ve learn a lot about what you have to—I don’t know is “give up” the right way to say it—but there are some things I just [exhales], things that seemed so important before, they just doesn’t matter anymore. And I was, you know, so fiercely independent before, and now, I have learned to ask for help. [laughs] And it’s not a weakness. It’s really not yet.

Yeah, something else sparked in my head about that. What was it? Actually, I was in a manual wheelchair for a couple of years before I got hold of a power chair. And that was just one of the best things that happened. Regaining independent movement was fantastic! It was so exciting and so exhilarating. And actually, it wasn’t until a couple of years ago that I found something that really summed it up for me. There’s an amazing lady called Sue Austin who has an underwater wheelchair. And it’s just watching her in that and move around the reef and that sense of freedom and elation. And oh, yeah, that summed that up for me. That was great. [laughs]

So, I don’t know if I can put my finger on an exact moment, but it was some point in those four years when I initially became chronically unwell. Yeah, I became disabled then. Like I say, I’ve been very fortunate, but it’s…[sighs] it’s thoughtlessness, I think, a lot of the time, and it really hits you ‘cause you’re not expecting it most of the time. And it can be the simplest thing. I remember it was coming up to Christmas, and we were in a card shop. So, it was absolutely packed, and everyone’s looking for their Christmas cards. And no one was moving in this aisle. No one was moving. And somebody looked around the people in front of them and said, “Oh. It’s a wheelchair.” I just thought…NO! It isn’t!!! I’m not a wheelchair! Aw. And if that gets you on the wrong day, you know, when you’re feeling really rotten anyway, when your body’s beating you up anyway, it’s just such a blow. And people say things without thinking.

JILL: I love what you were talking about, about being able to ask for help. And you seem to have this energy for adventure and experience in life.

NICOLA: Hmm. Yeah.

JILL: And I love to hear how you can still have that, where people would, I think it would be easy to say, oh, all that is gone, right?

NICOLA: Mm.

JILL: When you have to depend on, or we like to think about interdependence of people to live the life that you want to live.

NICOLA: Yeah.

JILL: And I’m curious how things have changed in those relationships or the people that you depend on since COVID-19, if there’s been a change.

NICOLA: I wouldn’t said there’s been a massive change since COVID-19. I think there’ve been some unexpected changes. So, I live with my parents who are my primary carers, and my brother, who they care for as well. And we’re very close knit, and we rely on each other. And we’ve all got our own health issues, so it’s kind of it, you know, you support everyone else. And [sighs] do you know what? It’s been a really rough decade. So, I became really, really unwell nine years ago. And I went from being the independent workaholic daughter who was sort of a reassurance for my parents, I suspect, that going forward in the future, there would always be someone there to look after my brother, to being another child who needed caring for. We moved down to the southwest, which is this beautiful part of the country. We live 10 minutes away from Dartmoor. We live 25 minutes away from the coast. And it should’ve been fabulous! And I became really unwell, and I became disabled. And my dad had a heart attack, through human error. And my mom had three major operations. And my brother’s kidneys started to fail. And it just has been the roughest decade! And actually, I think we stopped laughing quite a while ago.

And the funniest thing I’ve noticed since we’ve been stuck together 24/7 for the past four weeks is that we’ve started laughing again. That’s not something I would have expected, but I suppose it’s like anything. It’s sort of this is really trauma we’re experiencing at the moment, and it does put everything back into perspective for you. And it focuses you on just how fortunate you are. I’m so fortunate to have my family and to live where we live. And we’ve got a beautiful garden, and our sense of humor is coming back online, which is really nice. 

JILL: I’m so glad that you and your family are laughing, and that’s good.

NICOLA: Yeah. It’s amazing, isn’t it, the little sort of silver linings that come out at the edge of these clouds.

JILL: Mmhmm.

[gentle music break]

JILL: I was looking at your Twitter account. And I love this one. You said, “This sculpture is different for me. It’s the first time I will visually explore what it feels like to look fine, but not be fine.”

NICOLA: Yeah. Do you know what? Being honest, I think I’ve been, [sighs] I don’t know. Shall I call it cowardice? I think I’ve been a bit of a coward almost so far. I knew what I wanted to explore in my sculpture. I know what I wanna talk about in my work. I wanna explore this incredible emotional journey that I’ve been on with chronic illness, with being a disabled woman, with being a woman with an invisible disability. I think the thing stopping me, and it’s something a lot of disabled artists must wrestle with is, is aw, is that gonna alienate people? Is that gonna put people off? And what COVID-19 has really crystallized for me is that that bridge has to be crossed, and it has to be crossed repeatedly until it’s just not a barrier anymore. Until it’s not something we think of. Because I think on your website, it says “awareness to understanding to belonging.” And that’s exactly it! That’s exactly it. And it’s made me kick myself, really, and just think, oh, yeah, stop doing it on the sly. Just be really open about it and say, “Yes,” overtly, “this is what I’m interested in. This is what I’m exploring. This is what my work is about.”

JILL: I would guess that being vulnerable, which is what you’re talking about—

NICOLA: [laughs]

JILL: —is not an easy thing for many people.

NICOLA: Oh, no! That’s so true. That’s so true. And inherently, I think I’m such a private person as well. Which I didn’t realize. Isn’t that myopic? But I didn’t realize that until one of my friends in university turned round to me and said, “Look, I know that you’re really private, and I know that you don’t like to talk about things. But if there’s anything going on, you can just chat to me. That’s fine.” And it really made me stop and think, oh, wow. I don’t share things. I just take stuff onboard. I just help other people, and I really don’t open up. So, yeah. It’s quite an intimidating thing for me to do, actually, to sort of lay it all out there. And ah, it’s quite brave like that anyway, ‘cause you are. You’re putting yourself out into the public domain. So, yeah. I suppose it’s taken me a little while to get up the courage, but now that I have, it’s really quite exciting.

JILL: What’s exciting about it?

NICOLA: Do you know, I think I’ve been sort of laying the foundations. I haven’t been sculpting for that long. And I’ve been honing my craft, and I’ve been sort of building up a little tool box I’m really confident with dipping into now. And now, I’m at this point where I’m ready to push everything, to push myself and to push the clay and to see, well, OK, what would that look like? What would frustration look like if it took physical form? You know, how would I express the fact that the way I look and the way I feel don’t meet up. Sometimes they’re not even related. And I trained in contemporary theater. I used to direct and devise theater. So, for me, university was all about the collaboration. So, I miss collaboration. I’m really excited now to start reaching out. And I’ve made the first step. I’ve got a project on the go, which is gonna be about community and reaching out to people and hopefully for loads of artists to contribute to. So, that’s exciting.

JILL: Is that The Host?

NICOLA: It is The Host! [laughs]

JILL: Yes. I’d love for you to talk about that and how long that’s been happening.

NICOLA: It’s really interesting, actually. During this time in isolation, people have been panic buying. And OK, you can’t get hold of certain things at the moment like flour, because everyone’s baking! But the most troubling thing that we haven’t been able to get ahold of is my most critical medication. And it made me think we have this impression that modern society rests on very stable foundations. And actually, I feel that the pandemic is disabusing us of that notion because things are becoming overwhelmed so quickly, and supply chains are breaking down so quickly that it really does link back to The Host for me, to this project that I think came into being in my head last year. And I started just thinking about a sculpture of a dead bee, and then different things kept feeding into it. And at the start of this year, I heard about disabled protesters at I think it was an extinction rebellion protest who were discriminated against. I just thought, oh, come on! This is climate change! It affects every single one of us. Every single one of us should have a part in this, should be able to play a role.

And The Host, it’s about our impact as a species, really, which is a huge topic. So, I have distilled that down to bees. And the heart of the project is an installation of these huge pone bees that are gonna be scattered across the landscape and built by the community out of natural materials. Part of the installation is going to be witnessing them decay back into the earth and fall apart in front of us. I really want it to be inclusive. That’s a huge thing for me. You know, Devon Sculpture Park, who’s gonna host this installation, is really supportive of every sort of medium of art. So, I’m hoping that in the outdoor gallery space and their two indoor galleries alongside the installation, there will be work by all different sorts of artists inspired by the core themes of The Host.

And I also wanna use it as a vehicle to make Devon Sculpture Park more accessible, not just physically—but physically is important—because they’re all about the climate and about rewilding. So, it’s wonderful. But they don’t have any tarmac paths. ‘Cause you wouldn’t want to lay more tarmac. Who wants to lay more tarmac? It’s not good for the environment. But it is pretty handy for wheelchairs. So, physical access, I’d love to improve. I’d love there to be access to the galleries for people with visual impairments. I’d love there to be an accompaniment to every piece of art that allows people to access it. But also, this is a really rural part of the country. If you don’t have a car, it’s quite difficult to get around. Our transport links are patchy. I’d really liked to explore a way that we can make events that happen like this in rural locations accessible to people. You know, whether that’s it putting on transport, or whether it’s finding a digital platform that people can tap into from their homes. So, yeah, it’s supposed to take place summer 2021. And the website is up. Yeah, I need to start having loads of Skype and Zoom meetings with people and chatting about ideas and unpacking all of this.

JILL: Yes! It’s interesting you talk about the digital platforms, which is great. There’s just so much more happening. I’ve seen everything from, well, we’ve done virtual tours of exhibitions before. But I recently saw an exhibition that had, they must’ve had like iPads.

NICOLA: Yeah.

JILL: And they took people around on these private tours—

NICOLA: Yeah! I think I saw that!

JILL: —like five in the building completely. And I thought that’s really cool that it’s more than the virtual tour. ‘Cause I think virtual tours are a little difficult to navigate. They’re not very personal, but there may be some personal tours that you can give.

The other thing that comes to mind is we had an exhibition in the fall of 2018. There’s two individuals in the area who are blind musicians, and they wanted to work with us to musically describe the objects. We had photos of the objects. We had someone else helping us with audio description and the detail. And then they were given those details, and they created like a layer of musical accompaniment. So, there’s just this little more multi-dimensional way to think about the visual experience.

NICOLA: That touches on something which I think within the disabled community feels like common sense, but in society doesn’t always happen in that, if I’m going to think about how to make Devon Sculpture Park and how to make The Host itself more accessible for someone with vision impairment, I’m not gonna do that! I don’t know what would be great. I need somebody to collaborate with me. I need somebody with experience with a visual impairment who’s gonna say, “OK. So, this is what I’ve encountered before, and this is really restrictive. But this is really exciting. And maybe we can push this.” And, you know, maybe alongside this decaying sculpture, we could have a degenerating soundtrack or, you know? That’s much more exciting to me, and it’s just, and it makes sense. [chuckles]

Everybody’s life experiences, it’s almost like a set of lenses. And those are the lenses they view your work through. And the fact that everyone can come out with a slightly different experience, with a different take on something is really, it’s really joyful for me. That’s why I hate being prescriptive about a piece of work. I suppose that’s why I’ve been slightly reticent as well about being more open with my first piece is about, that this piece is about when I was experiencing this emotion. And this is about this journey. And because I don’t like to say, “Well, this is what this work is about, and this is what I expect you to see in it.” Absolutely not. Tell me what you say, you know. Come and tell me what your experience is of my work. That’s fascinating.

[gentle music break]

JILL: I’m curious, what have we missed that we wanna make sure that we chat about?

NICOLA: It’s so funny that we started this by you showing me the snow on the ground. Because it has been unseasonably warm in the UK. It’s so warm right now for April! And that is really draining for me. I was just coming out of sort of my winter hibernation. I really sort of close down for winter, and I don’t accomplish much. And that’s fine because it’s just not gonna happen. So, I was coming out of that, and then COVID-19 hit. And then the weather got really, really warm. So, I haven’t been sculpting much lately. You know, I’m supposed to be working up to an exhibition in Exeter Cathedral with the South West Sculptors Association. And I suppose the pandemic practically is just coming along with several other things to slow me down [laughs] and throw up some practical barriers that I can sculpt at home. I do sculpt at home. I’ve got a studio in my garden, which is lovely. But clay is kind of like a pot plant. You have to keep spraying it. You have to keep watering it to keep it alive and healthy. And so, I’m fighting the weather a lot at the moment to keep my work viable. And I don’t know how I’m going to complete the pieces I need to in time for that exhibition, to be honest. Because physically, I might get there. I might be fine in time for June. But I’m not gonna be able to leave the house. I’m not gonna be able to transport those works. I don’t have the facilities to mold or cast them. So, there’s a bit of practical fallout there.

JILL: So, that exhibition will take place?

NICOLA: At the moment, they’re saying yes. They’re saying it will go ahead. Whatever the time may be for that, it’s gonna go ahead. It will just be delayed, I think. I think it probably should be delayed. I don’t think there should be a massive rush back out into the world in June. I don’t think that would do us any favors. So, I have my website, and I have Instagram, which I usually use very regularly. I know I am trying to tap into Twitter and Facebook. But I really find Twitter fascinating for just for reading and for tapping into the disabled community. And there’s so much going on right now. There’s a lot of anger. There’s a lot of fear in the disabled community right now. And I can…I can appreciate that.

I don’t know if it’s happened in America, but in the UK we had some guidelines issued by the British Medical Association, which told us that because we don’t have the facilities, we need to care for everyone with COVID-19, they will be prioritizing people, and only certain people will get ventilators. Those guidelines, they were published alongside some notes. And the notes stated that it would be completely inappropriate and it would be wrong and it would be illegal to say that everyone over a certain age or everyone with a disability are gonna be excluded from critical care. We couldn’t possibly do that. But then they lay out these criteria for being treated, and the criteria are co-morbidity of conditions, likely lifespan, and whose condition is the least complex. I mean, when those are the factors, you are talking about disabled people. You are talking about old people. And the fact that they’re not saying that overtly is just a legal loophole. Really?

I understand the anger online, and the word “eugenics” was flying around on Twitter yesterday. And it’s just…. There’s a lot of talk here at the moment as well about our care homes. We have a lag on the numbers being shown each night on the news. You know, this is how many people we’ve lost. This is the total now in the UK of people who have died from COVID-19. And it’s not an accurate figure because it’s only people who’ve died in hospitals. It doesn’t include care homes, and it doesn’t include death in the community. And I think there’s quite a big lag on that. I think it’s at least 10 days. And people are really starting to flag that now as an issue because it’s almost saying that those numbers don’t matter. That is not a big deal if they don’t contribute to the whole. And we’re talking about disabled people, and we’re talking about elderly people, you know, in supportive facilities who live in the community, who live in care homes. [heavy exhale] And here we are again. And it just feels like we’re back at a point where we have to talk about the value of our lives, which is pretty painful. I mean, a life is a life. That should be the only criteria for being given an equal chance at survival. We are facing a virus that doesn’t discriminate. And here we are discriminating because we weren’t prepared.

And it’s not like we didn’t have forewarning. You know, it’s not like there weren’t previous pandemics. It is concerning how quickly we fall to the bottom of the pile. From where I’m sitting, there’s gonna be a lot more inequality. And coming off the back of post-austerity Britain, where a lot of people claiming benefits have been rebranded as “scroungers,” and coming off the back of COVID-19, where our lives seem to have been devalued as well, it’s really unnerving in a modern day and age, in a modern country that likes to prided itself on being a forerunner in human rights. I think this pandemic is revealing a lot of things, a lot of progress we’ve made almost to be an illusion. There’s a lot of talk. There’s not necessarily a lot backing it up. I know that in 2017, the conditions for disabled people in the UK were judged to be at a human catastrophe. That’s what the UN said. And…we’re going back into an economic crisis. It’s a very unnerving position for disabled people to be in, I think.

JILL: Maybe the specifics and the details are different from country to country, but the sentiment is the same: What is the value of a person?

NICOLA: Yeah. And there are amazing people in this community who fight and fight to forward our rights to have progress. I saw it in Crip Camp, you know. They fought and fought for these rights, and they were enshrined in law. And they were sort of ignored, and they fought to get them recognized the way they wanted them to be recognized. And three years later, they were endangered of being repealed. And it feels like that’s exactly what happens. We gain ground and we lose ground and we gain ground and we lose ground. And it feels as though the value of a disabled person is linked to the health of the economy.

JILL: Our hope is that there are a lot of people talking, and there are a lot of people, as a disabled community, maybe people are getting more connected across the world.

NICOLA: Yeah. Yeah, it feels that way. I mean, like I said this there’s a lot anger. There’s a lot of fear online, and it’s very much justified. It shouldn’t have taken a pandemic to bring these things to light, to offer disabled people online appointments with their doctors, which would’ve benefited us years ago! It shouldn’t have taken that. But at the same time, what I also feel online is building momentum. And I hope that that will carry forward. Especially, if what I’ve been reading is right, and this is, you know, this potentially as a pandemic, it’s something that could happen again. And it’s something that could happen again more frequently because we’re encroaching on land that’s been virtually untouched before. And we’re endangering species that viruses have lived on for years, and suddenly they need a new host. And we are a great option. There are seven billion of us. We’re a brilliant option. And it comes all the way back, to me, to that project, to The Host, that I’m working on and to our impact as a species. And you can see why a big element of it  is inclusivity. And like you said, it’s about worth, and it’s about individual being, every individual being, important and contributing to the whole.

JILL: Most definitely.

NICOLA: So, the website’s up, and there’s a section on the website about collaboration. Alongside that, I’ve got some text that I was gonna send round, actually to different artists, which is it’s an invitation really that says, oh, I think you could contribute.

[gentle music plays through goodbyes]

JILL: Mmhmm. Well, thank you so much for your time today!

NICOLA: Thank you so much! And enjoy the snow!

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music: “Music for Manatees” by Kevin MacLeod. Link: https://incompetech.filmmusic.io/song/4102-music-for-manatees. License: http://creativecommons.org/licenses/by/4.0/.